Breast cancer lesson 156: You can face any bend in the road, if you have the right people holding your hand

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For the last nine months, our living room has resembled a rather niche card shop. Of course, it started with good wishes for our engagement – and what wonderful wishes they were. Then, mid-January, there was a sudden shift to post of the ‘get well’ kind. Throw in the odd teddy bear, a few Happy Easter cards in April and a steady trickle of notes and messages throughout active treatment and you’ll get the idea.

Starting each day surrounded by a wall of words has been a real boost for me. Never far from a message of encouragement, these notelets and cards have been a constant shoulder of support, a reminder of all that is good in the world and a sign that, wherever you are, you are never far from people who love you. These words have moved me deeply, made me smile, made me laugh out loud, made me cry, made me pick up the phone and get on a train (to make contact) and given me the chance to reflect on the happy memories I have already banked over the last three decades. That’s why I haven’t moved a single one (even to dust)! And, that’s why, it’s a massive step for me to even contemplate taking them down (might actually have to get out the polish).

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Apart from the genuine kindness shown by these handwritten gestures (I am a big fan of all things handwritten), the main thing that has struck me about this word-filled wall is that I have often under-estimated just how powerful a small gesture can be. For starters, I now fully appreciate the excitement of hearing the post land on the doormat. I now see how a well-written card has the power to change the course of a day. I also now realise that the cheery post-its I used to leave on colleagues’ desks, the handmade gifts I have posted, the acts of kindness I have delivered and the messages I have written over the years have really meant something to the recipients. People have written to me about events and gestures that at the time didn’t seem significant. I now know just how much those gestures meant and, having been at the receiving end of an awful lot of kindness myself, it’s not something I will ever forget.

What is so exciting about the fact I have kept the shelves stocked with well-wishers is that I now – as part of moving forward – get to take them down and re-read the lot. I imagine there will be more than a few tears as I relive all the hugs, positive vibes and amusing memories.

Of course, I won’t be recycling them. I will pack them away, so that I can one day be reminded of just how lucky I am to be alive and to have an amazing group of people with which to share my life. Until then, I know the memory of them will live on long after they have relinquished their spots on our dusty shelves. And, excitingly, I have just received a few amazing congratulations cards (like this one), which means the shelves won’t be completely bare!

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When you have one giant paper-based hug on tap, thoughts of giving back and ‘paying it forward’ are never far away. That’s why I started my pink hearts campaign and why I now have lots of reasons to seek out and spend time with the people that have shaped my life and made me who I am. So far, I have delivered more than 20 fluffy hearts and messages to special people across the country (in no order of priority) and I am excited about the packages I have left to deliver. It will a take years, but years packed with special moments sounds pretty good to me.

I have set up a pink hearts page here on my blog, because I hope that this little initiative inspires others to reach out to the people they love. The idea is simple. First, make a pink heart (I have adapted a Kirsty Allsopp design for the purpose). Next, tuck it inside an envelope with a message explaining what to do with said heart along with a personal and heartfelt note describing just what that person has done for you. Then, hand-deliver that heart to that person. The catch? Each recipient shares their address (except for hospital staff because I don’t want to appear stalkerish) so that I can a) update my address book and b) send them a little surprise gift sometime in the future to remind them of the importance of seizing the moment and looking for the beauty in each and every day. I know that the heart will fade, but I hope the message lives on forever.

It is a sad fact of life that it takes a serious illness for us to say what we mean to each other. And, this is something I want to change. I have been writing this blog because I want to use my experience to help others. If, through one illness, we all learn to say what we feel and tell those around us how important they really are, I feel I will have made a positive difference this year. If I’ve been put on this earth to spread the love, then spread the love I will.

Whether you sew a pink fluffy heart, or pick up the phone, now is the time to get in touch. Tell loved ones what it is about them that makes you smile. Tell friends how they have made a difference to your life. Tell them, because otherwise they may never know how much they mean to you.

I don’t want you to wake up one day and feel like you’ve missed the chance to make a difference. I want you to look for the good in others and celebrate it when you find it.

We, none of us, know what is around the corner. But, if cancer has taught me anything, it is that you can face any bend in the road if you have the right people holding your hand.

Thank you for everything. You know who you are!

NB: Given the volume of notes I have received, I do have a fairly good grip on the get well card market in general, so do get in touch if you’d like some recommendations.

Breast cancer lesson number 58: If in doubt, just ask. Kindness is never hard to find

Cancer has done one thing for me for which I will be forever grateful. It has restored my faith in human nature and forced me to not just see and appreciate, but actively look for the beauty in others.

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In lesson number nine, I talked about the fact that kind people rarely make the headlines, but that if you looks beyond the stories of sadness and destruction, you’ll find a real beauty that will move even the strongest person to tears. I am delighted to report that nearly three months after my initial diagnosis, these people remain my front page and my headline news.

I was reminded of this only yesterday, when I returned home from hospital to find a parcel waiting for me on the doormat. It had come all the way from the US and it contained a creative solution to a PICC-shaped problem.

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Anyone who has seen the picture accompanying lesson number 48 will know that a PICC line is basically a piece of plastic tubing poking out of my left arm. Yes, it’s practical, yes it’s clamped into position with another piece of clinical-looking plastic and no it doesn’t actually bother me (except in bed when I try to sleep on it).

The trouble is, I think it bothers everyone else. It certainly is no oil painting and Duncan won’t even let me show him the tubi-grip style bandage protecting it. In fact, I had a few messages from friends telling me they couldn’t even read that day’s post because the photo looked a bit menacing. While I am fond of my pink cardigans, I’m not sure I want to wear them all summer.

So, what can turn my patient-looking arm into something a little more palatable? The answer, even if you spend hours diligently googling, is not very much. If you want a radioactive-style armband for the shower (see lesson 51) or a waterproof swimming cap cover, you’re in luck. If you want something made out of fabric that looks more like an iPod holder sleeve, you won’t get far.

Enter Courtney, otherwise known as Riley Jane Designs. This wonderful ER nurse from the US makes beautiful PICC line chemo cuffs. Having experimented on patients to get the design just right, she has been shipping them across America in an attempt to bring a splash of colour to the arms of those undergoing treatment.

That is, until now. Unable to find a UK equivalent, I contacted her on the off chance she might either be able to make some for me or send me the pattern so I could have a go myself. Within hours she had replied. Within days she had bought the material and just one day after supplying my arm measurements, they were packaged up and travelling across the Atlantic to my doormat. She didn’t know me at all. She didn’t question why I needed one. She just picked some fabric and, in so doing, made my day. Goodbye tubi-grip and hello handmade chemo cuff (they are reversible too, so with two cuffs, I get four different styles to choose from).

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Courtney is a beautiful person and all I hope is that, every day, someone reminds her of that fact. Thank you for being a kind and thoughtful stranger. You make the world a beautiful place just by living in it.

So, this is my little way of reminding you to seek out and thank the people who bring happiness and a smile into your lives.

Kind people matter and they shouldn’t be allowed to forget it.

Breast cancer lesson number 45: If it helps, pass it on

Throughout my life, whether it be guide camp, bikram yoga, school, work or swimming, I have always been the one to look the part. If it comes with a kit list, I am in my element. And, if it doesn’t, I will feel duty bound to create one. I buy the t-shirt and, eight times out of ten, I do detach the price tag! (One notable exception is a yoga top that I know would be guaranteed to put people off their postures. I like to look the part, not get arrested!)

The same goes for cancer. Our house is packed with every factsheet and leaflet going. Given the seriousness of the illness, I didn’t think my old tracksuit bottoms and loungewear wardrobe were quite up to scratch. So, two weeks after being diagnosed I made a trip into central London to buy some new pairs (along with zip-up tops and button down nightshirts). I bought a White Company toweling robe because it was ‘essential’ and even found matching slippers to go with my hospital dressing gown. For the next stage, I already have the hats on order, ginger tea in the cupboard and udder cream on the bathroom shelf. I have booked my ‘wig referral’ and my PICC cover research is also well underway. That chemo chair is coming, and I want to be ready!

Something wonderful happened to me yesterday while trying to compile the ultimate chemo kit list. First, I posted my chemo queries on a secret Facebook group (it’s called the Younger Breast Cancer Network (UK) and it’s open to any young women with a breast cancer diagnosis). Within minutes, there were so many great recommendations posted (from ice pops to boiled sweets). Then two women sent me private messages offering to pass on both unused and rarely worn items (that probably seemed like essential purchases at the time). When I received these messages I was so touched by their thoughtfulness. I was also reminded of the fact that I am not alone in my desire to stock up and take the ‘Be prepared’ Scouting motto to extremes!

A lot of the time, what we’re buying is specific to the treatment we’re having. In truth, I probably won’t need a sleep cap again and there is such a thing as too many headscarves. I will try and be inventive in redeploying the more fabric-based items, but I was inspired by these women (my latest kind strangers) to think about how I might ‘pass it on’ too. In lesson 37, I talk about the concept of ‘passing it forward’ and starting a chain of kindness. I would like to think when my caps have done their time, they could be warming someone else’s head. I would love to imagine someone getting joy and a self-confidence boost out of one of my summer caps (that have admittedly not made it onto my own head yet). I would also like to think that I could share more than words with others facing up to a breast cancer diagnosis.

In both cases, I have accepted their kind offers. In return, I have asked each one to nominate a breast cancer charity so I can make a donation. I plan to pass on the items that have made me smile (or brought me relief) when cancer has had enough of me and I would encourage anyone reading this to find a way to do the same. While I am not geared up to be the cancer equivalent of freecycle (or a cancer swap shop), I would like to think I could help you find a new and loving home for your cancer cast-offs (there’s a swap shop in the secret group for starters on which I could post items). If you have something to share and no one with which to share it (or are a hospital or charity looking for donations of drain bags or other treatment-related items) please post here or contact me directly (see Get in touch for more details). Together we can share the love – and the expense!

Second-hand comes with a story attached and that thought makes me smile.

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

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Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

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Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

Breast cancer lesson number 30: Life is a gift worth unwrapping every day. Make sure you share it

At the end of last year, before cancer came along, took me by the heels and shook me hard, life had already taught me a really big lesson. Just before Christmas, I packaged up more than 50 individual present hampers for family and friends (please read the rest before you declare, where was mine?!). Looking down at my 200 handmade items – everything from chutneys and jams to bath bombs, soaps, candles, Christmas hearts and spiced festive biscuits for the tree – I remember thinking that all those late nights, packed weekends, paper cuts and missed film plotlines (usually lost while untangling thread) had been worth it, because I was going to make people smile.

I was wrong.

Firstly, I didn’t think that actually hand-delivering them (rather than leaving them secretly on desks or sending them via friends) and explaining what was in each one (apologies to my lovely colleague who mistook a bath creamer for a white chocolate treat) might have meant something to those on the receiving end. Secondly, by burying myself away for months on end I missed more than just film plotlines. I missed friends. I missed ice skating at Somerset House and a warming post-skate (or shuffle) hot chocolate (always like to dream that I am on the set of Love Actually). I was too busy to see the Christmas lights. I flew to Ireland for a wedding and was too ill to raise a toast to my beautiful friends. I woke up on Christmas Eve and wondered just where December had gone. In short, I was so busy doing, I wasn’t actually living. I was so busy making things, I wasn’t actually making memories with the people I love. I thought I was doing something kind. But, I missed the point. And then, as we all know, I discovered that lump!

I woke up on January 1 knowing this would be the year to start doing things differently. And, I think life, knowing how quickly I would fall back into the same routine, thought it would throw me a life-threatening illness just to make sure.

So here’s my conundrum. Over the past eight weeks, I have experienced a lifetime’s worth of kindness. I have tears running down my face as I think about the wonderful words, the pre-surgery chocolate and the thoughtfulness that has filled up my heart, my stomach and my living room shelves (to be honest, any surface at the moment). From the tea lady who snuck me extra biscuits to a well-timed email from an old friend, I feel truly blessed. It seems strange to think that cancer has brought me so much happiness, but it has. My task now, is to both thank all those who are helping me smile through this chapter and to learn to carry this feeling of happiness with me for the rest of my life.

I have spent a lot of time over the last few weeks thinking about thanking. I know now that life is a bit too short to bury yourself in toy stuffing all the time (even though I love my craft). That’s not to say I won’t be untangling thread any time soon (in fact, I have a new sewing machine to play with) but I think people might actually enjoy a little less stuffing and a little more time.

So, here’s my plan. Drawing on the wonderful skills of Kirsty Allsopp, I have made (and will continue to make until the world has no pink felt left) a series of pink hearts with a pink ribbon running through each one. They’re simple to make. They’re great for my arm rehab. They represent in colour and design the challenge I’m facing. They do include toy stuffing, but in limited quantities. And, yes, they’re a little bit cheesy, but anyone who knows me well will know that’s just my style.

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Together with handwritten messages and pale pink envelopes, I intend to hand deliver each one of these hearts to the people in my life who’ve made me smile. No secret gifting, no postage stamps required. Just me, giving my time so that I can give back to those who have selflessly spent time thinking about me. Yes, this may mean getting on a plane or trying to get the name of the nurse who made my stay in recovery so enjoyable. Back in lesson number nine, I said I am not sure I will ever be able to thank you all for the kindness you have shown me so far, but that I would spend the rest of my life trying. I won’t stop until I’ve delivered each and every one.

This is a heart I want you to hang (even if it’s in the airing cupboard or the downstairs loo). Every time you look at the heart, I don’t want you to think of me. I want you to think of all the people in your life that make you who you are and make you happy to be alive. I know that when the business of life gets in the way, it often feels hard to find the time to feel thankful. But, you only get one life. This is your moment and no one else is going to help you seize it. That’s how I feel right now, but all I have to worry about is my next hospital appointment and whether or not I have enough tea bags and milk in the fridge. I want to look at my heart and remember this moment – and the cancer that told me to see the beauty in others and every day.

But that’s not all.

This heart comes with a hidden extra. For every heart I give, I would like an address in return (not because I am a stalker). Yes, this will help me cleanse my address book. But, it will also mean that sometime in the future (should you not move of course), I will be able to send you a little reminder. It won’t come with a note. You’ll probably think it’s been delivered to the wrong house. But, I’d like to send you a little surprise, a little act of kindness that helps you smile through the battles in your life. After all, you’re only human. The heart will fade or get dusty in the attic. Life will get in the way. We all need something to look forward to.

I’m also going to start a brighter life list (watch out for new page coming soon). This is not a bucket list – as my consultant says, we’re aiming for the grand old age of 92! This is a public declaration of all the things I know I want to do, but have always found an excuse to push down the list. They’re not ground-breaking. They’re not all particularly special. But, they mean something to me. By posting them on my blog, I want you to help me tick them off. Please add to the list (if you know me better than I know myself), or join me on an adventure if you want to tick it off too.

Life’s a fight. But life can be kind too – and the people in it. Kindness is what I want to gift to this world, one fluffy pink heart at a time…

NB: it may take you years to receive your heart (I won’t just fling it to you at a party), but please know that if you have shown kindness, it’s on its way!

Breast cancer lesson number nine: Some tears are worth crying

I’m one of life’s criers. I shed tears at a screening of Cool Runnings. I well up on hearing the heartfelt stories on Surprise Surprise and X Factor (yes, I do realise I have admitted this publically!). Even reading sentimental verses on birthday cards in shops is enough to set me off. In short, leaving the house without a packet of tissues is a daring act.

For a sensitive soul who wears her heart very much on her sleeve, I thought a cancer diagnosis would be my undoing (and shares in Kleenex, my pension pot). But, I must confess, beyond the odd epic wailing sessions (the boardroom at work being a particular highlight on day 4), I have shed very few tears about the unfair situation I now find myself in.  

In fact, most of my tears are due to the fact I have been truly touched and inspired by random acts of kindness, thoughtful gestures and supportive messages. These are tears worth crying in my book.

Read the news headlines, and you could be forgiven for thinking that the world is a pretty dark place, scarred by death, disaster and destruction. Scratch the surface, however, and you will discover that behind every sad story lies real beauty and tales of love that will move even the strongest person to tears. The truth is, the world is full of wonderful people – you just need to know where to look.

These wonderful people may not stop the presses, but there are so many reasons (too many for an entire blog, let alone one post) why they should. In my life right now, they are my front page and my headlines. They are the soundtrack to each day, filling up my heart and my Blackberry with the most humbling words and gestures.

Kindness takes many forms. It’s a cup of tea from a busy nurse. It’s a knowing smile from a stranger across a waiting room. It’s a thoughtful note left on my desk. It’s a touching email from someone I once helped. It’s reconnecting with an old friend. It’s a tip about wigs from a client. It’s a colleague who prints out a diagram demonstrating how a plane stays in the air (see lesson number four to see what I mean). It’s a plant with kind wishes from New Zealand. It’s a sleep CD. It’s a complete cancer care kit from teams at work – everything from an inflatable bath pillow to an overnight bag. It’s an offer of help. It’s a chemo care box from my kind soul, complete with words of encouragement. It’s cake and tea in plastic cups at Sketch (plus a pretty exciting excursion to the toilets). It’s a four and a half hour bus ride for a hospital appointment. It’s ice cream sundaes and smiles. It’s a coaster, roses, books and cookie cutters. It’s a ‘like’ and a ‘follow’ on social media. It’s an impromptu blood test (sorry Duncan). It’s a knitted teddy. It’s a knock on the door on a Saturday morning. It’s curry, cuticle cream and good chat. It’s research completed by a friend. It’s handmade bags for carrying my drains. It’s wine at lunch time. It’s chocolate and homemade treats to fatten me up. It’s a charity run – or two. It’s a never-ending list of kind acts that makes me feel happy to be alive – and ready to fight.

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Sorry cancer, in the face of such kindness and generosity, you don’t stand a chance. There are many memories from this phase that I hope will fade. There are others I will want to cling to forever – and take forward with me.

I am not sure I will ever be able to thank you all for the kindness you have shown me so far – and I haven’t even been anaesthetised yet! But, I am determined to focus on getting better, so I can spend the rest of my life trying.

So, this is my shout out to all the nice people in the world. If you’re reading this, that includes you. Thank you for being part of this chapter and for making me smile (when I am not crying about how amazing you are). You know who you are…

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